kiddos

Saturday, December 29, 2012

Three posts in three days...I guess its safe to say there is alot on my mind.

In followup from yesterdays post, when I mentioned all the good in this world and how I truly believe there is more good than people like to recognize...my friend Jaclyn emailed me today and told me that they were planning the funeral for sweet Gianna and that they were concerned about the expense. The contractor who built the deck on their home, helped make arrangements and they have had the funeral, burial plot and everything else donated to them for free. All of this good will from complete strangers...who still help to bear the grief of their loss. I think this is beautiful. We too have felt so much kindness and goodwill sent our way, and always from the most unexpected sources.

It truly warms my heart in ways you cannot imagine.

Today has been an interesting day. We filled it with garage cleaning, packing up tools for our move. Yes, for anyone who didn't know, we will be moving in the summer, but we still do not know where, as Mickey is still in the interview process. This is a stressful time for him because of course, most colleges will be calling for formal interviews around the same time I will be in Philadelphia, which leaves three small children in need of care, or putting off the interviews which is not ideal either. I just keep hoping that our stent in Philly will be brief, due to having a healthy boy who can come home very quickly.

I truly believe that he is doing so well, and despite the unknown path we take, I feel confident that our miracle is waiting there. This does not mean I do not get discouraged at times. In the past few weeks, several mothers have lost their babies due to hydrops. Another died this morning and I just started getting scared. I am scared...simple as that. I know my journey is not changed by any of these losses, but I truly feel so heartbroken at the loss these mother's are experiencing and I don't want to go through that pain. Its hard to explain and I am not sure anyone who hasn't been through this type of experience can truly relate...I carry within me this beautiful litle boy who has a heart beating strong and long limbs kicking and I have loved him since I first saw those little lines that said POSITIVE....loved him more when I saw his beating heart and loved him more when they told us he was a boy and Oliver danced around the sonography room...my love only continues to grow and I see a future that includes him...

I am scared of losing that future. That life that I desire more than anything, a life that includes my four children in every scene. Mickey reminds me that there is no way to ensure that future includes any of our children, and that I can't do anything more than I am doing to protect it. I know this is true. The future is as unknown for our other kids as it is for Auguste. Everytime I have gotten pregnant I have had that brief wash of dread at the knowledge of loving yet another person with the kind of passion that one can't imagine breathing without them...and yet...that is parenting. I heard said once that parenting is learning to live with your heart walking around outside of your chest.

So ...My four little hearts with thier four little lives and my job as thier mother is to pray that God protects them and keeps them...and trust that He will.

That's a hard task for a control freak like me...and I guess that is why God continues to challenge me with it. I am up for the challenge...and just ask for prayers that I can get better at it, and keep learning to parent gracefully.

(of note, its ironic that my blog ended on that note, because one of the parenting books I have found to be most profound is Grace Based Parenting by Tim Kimmell, if you haven't read it, you should).

Friday, December 28, 2012

Family picture taken by my dear friend Julie Blum as she visited from Baltimore

Trying to enjoy every bit of my last pregnancy

On Tuesday, Christmas Day, our Auguste made it to the 32 weeks mark. I went to the doctor today for an ultrasound and a visit with the maternal fetal docs in Greenville. Things looked really good. His chest was almost completely lear of fluid with only a small amount of fluid at the base of each lung. His abdomen was still distended. Two measurments were taken, one measuring 36 weeks and one measuring 37 weeks and 5 days. A week and a half ago the abdomen measured 35 weeks and 5 days. So, basically it wasn't clear if the abdomen was stable, improved or worse....but Dr. Dillinger was still unimpressed and doesn't seem to be overly concerned regarding the abdomen, stating once again that it is the last to reabsorb. I am of course bothered by it, but I am relieved by the way the chest looks. They estimated the abdomen in the 97th percentile, obviously...and they estimated weight at 6 lbs 9 oz (give or take a lb) and that of course is mostly extra fluid.Dr. Johnson at CHOP has told me that he has not seen things get worse after 33 weeks, and therefore, I think i will breathe a sigh of relief when things look good next week (wishful thinking)....however, due to the nature of this horrible hydrops, I am not sure I will be at ease until I hear him crying and see him doing well...as I know that all of these babies present differently, and anything can still happen.However, this is not to say I am not thrilled about the way things looked today.We took a few more photos. This child has had one to two ultrasounds a week for the past 13 weeks and yet, I can never get a very good photo of him because he HATES the paparazzi. He always holds his hands over his face and is very uncooperative, but here is the latest image of today. The little parts of him we do get photos of are quite beautiful.Can you believe we have been on this journey for 13 weeks? I have reflected a lot lately about those first few weeks. The idea that termination was recomended, and that had we taken that route we would have never had all these experiences, good or bad...it amazes me. I look at his little face and I thank God that we never considered such a thing. Our lives have been changed so greatly by this little boy and I have to keep pinching myself as the weeks pass and he keeps improving, because I truly never expected things to move this direction. I prayed for it, hoped for it, but truly looked at the reality of the situation and the logical part of me did not think it was possible...and yet, today, on his scan, his lungs looked so big and full and expanded to the chest wall and he keeps kicking at me (which at this point is quite painful) and I dare not complain because I am just so very grateful for every second.I wanted to post something beautiful written by my friend Jaclyn, after the loss of her sweet Gianna on 12/26/2012. Most of you know that Jaclyn and I met on a hydrops support group page form facebook and became fast friends due to the similarities and the fact that we were both getting treated by the same doctors at CHOP and had due dates in the same window. I am devastated by her recent loss...but her strength in the face of this storm has enocuraged me. I loved how she described what she had learned from carrying a baby with this condition, and it reminds me that every minute is worth it.

What a long journey this has been for my family. Our little girl Gianna Renee Natale was born Dec. 26 at 1:54 pm by c section. I was so scared knowing the out come may not be good. Ii never gave up on my little girl. When the took me in for c section I was given anxiety meds to just keep me calm. Baby was born and my husband was there watching her. The neo natal dr took her right away to try to stabilize her. While i was being sewn up neonatologist told us they were doing everything they could but she wasnt reacting to it. I knew we had to let her go be with the lord. The Lord gave us two hours after she was delivered where she lived and we held her and loved her and kissed her and told her how strong she was and she was our angel. Her heart stopped beating as she was held in her father's arms.There was no breathing tubes, machines nothing just our girl being taken so peacefully! I am so thankful for those two hours we got with her! The Lord gave us that to remember forever! My heart hurts terribly but I know she has another purpose and the lord needed my angel.I will never forget this experience as I may not have had much time with my daughter but she taught me so much. She taught me not to be afraid and to face my fears, she taught me to never give up, treasure my family and appreciate every single thing about life and to love until it hurts! She will always be our little girl and im so thankful for this experience!Thank you everyone for your support. I met a great friend here... Who has been such a support and constant reassurance as she is hurting too she never stopped being a great friend to me! I pray for you all that have traveled the same road as I and i continue to pray for the families that are still fighting there battle! Love to all

I feel that she touched upon something very profound in that message, because she reminded us that even when things disappoint us, even when they don't turn out the way we want or expect, even when our hearts are broken to pieces, that we still grow and learn and become better people, especially when we recognize that. Auguste has taught me to face the greatest fears of my life head on...don't try to avoid them but walk towards them and rememeber that every single experience in this life helps us grow. Loving til it hurts, and giving sacrificial love is what life is about...letting go of all the self preservations you possess, letting go of pride and expectations and just loving unconditionally even in the face of inevitable pain...this is the only way to truly experience life.

I was doing a bone marrow on a man today and as I was performing it his wife and our medical assistant were talking about the fate of the world and the future of our children and revolutions etc...I thought about it and just said "I choose to believe that there is much more good in the world than bad, with every bad thing that happens, there is a response from a million good people. I choose to believe that more people want good for the world, and more people desire peace and compromise and happiness...I know that the media shows us lots of horrid things, but just because someone is the loudest or the news reports the bad and rarely the good...that doesn't mean it represents the majority, and I choose to believe the majority represents the good in the world and in the end, that will prevail".

Maybe that is the little pageant queen within me who dreams of accomplishing "World Peace", (which, incidentally, was #3 on my friend's 8 year old daughter's Christmas list)...so keep believing, keep praying and keep loving one another until it hurts...

Thursday, December 27, 2012

Many many weeks ago, when I was in the first few weeks of this journey, I spoke about calling my Grandfather's voicemail, over and over, and just listening to his sweet voice. The recording of a voice long gone, but one that no one could quite bear to let go of...so the voice still answered the same number I'd dialed a thousand times in my life...the unfailing voices that always answered, always gave support and always prayed. Nearly five years ago my Grandmother no longer answered, and my Pappy stopped answering in August...but his voice remained true in that recording...."God Bless You" he said.

I was so comforted that day, just hearing his voice saying those simple words.

My best friend told me days later that in some of the earliest civilizations, people would call upon those who had gone before them in times of distress, to interecede with God on their behalf.

I haven't shared this before because I have truly been pondering the words of that all this time. The idea of what it means to be made in the image of God. The idea that humanity in its rawest form desires to be closer to God. The idea that no matter what you believe, where you were born, what your worldview is, the most primitive parts of us call out to that higher being when we feel distress.

The instincts of man have always fascinated me. The instinctual way my infant son reached out to hold his infant sister's hand when she cried, the instinctual way we protect our children, the instinctual way we fall in love with one another, and desire companionship and acceptance from one another. The instinctual way we will call out to those who have passed, and to God, to help us and protect us and love us.

Yesterday my friend, who has journeyed with me through this hydrops nightmare, lost her child. She carried her own beautiful baby girl. Protecting her and doing all she could to save her life. Many long weeks added to her child's life due to a mother and father's love and devotion. Two precious hours spent holding her and talking to her before she drifted into Heaven.

We both knew, when we decided to pursue this journey, that the possibility of this ending was great, but it doesn't make going through it any easier.

In those earlier, darker days, my friend became my positive reinforcer, always reminding me how good our babies were doing and how much we had to be grateful for during these extra weeks we offered our babies, and to stay strong and to believe in miracles. It hurts that her journey ended too soon. It makes me reflect on all that we have done and all the hopes we carry with these babies.

I try not to be discouraged, I know that Auguste and I have another road to travel, but it does remind me that I do not know where this road leads me. I can not see the ending and I do not know what lies around the next bend. I just walk in blind faith that I am being led there for a reason, even if I never know what that reason is or why I was chosen to travel it.

And the inner most part of me calls out for guidance, calls out for faith that the path I take won't lead me to more than I can bare, calls out for hope that my miracle is only a few weeks away, and to keep walking towards it, and trust in it. ...

Monday, December 17, 2012

Todays appointment went well. It was nice to have Mickey there with me again. Auguste's little lungs looked good. It has been a while since Mickey has seen them, so for him, it was remarkable improvment. Dr.Dillinger feels they look even better than they did two weeks ago before I left for CHOP. His abdomen is measuring 35 weeks and 5 days, which is not concerning as far as distress at birth, but still perplexing and unclear if it will still resolve or what is actually going on.

Dr. Dillinger did mention that he could not say for sure if any fluid was actually inside the lung tissue, which would cause pulmonary edema, and I had not heard much regarding that yet, so I have some research to do tonight.

I then met with Dr. Twedt, who is wonderful as usual. She once again encouraged me to go to CHOP for delivery and even said that if she were in my situation, that is where she would go as well, which was reassurring.

I also still don't know what we will face after he is born, and I am feeling confident he will live, but I still struggle with not knowing what struggles he will face.

Please pray that his sweet body continues to reabsorb fluid, that his lungs will have proper function when born, and that the ascites will continue to resolve over the coming weeks.

As for the rest of us, I have returned to work and am happy to give the "hydrop obsession" a reprieve. However, I do miss picking kids up from school and our afternoons together. As well as my days with sweet Em. That girl is a mess. She has begun changing out of her pajams every evening after we put her to bed. Tonight she came down in a backward shirt with one hand holding up a pair of Eliot's shorts. Today Oliver developed a fever at school and Mickey went to pick him up. He was sleeping in his teachers lap, which I found so sweet and comforting. The doctor checked both Ollie and Ellie for flu and both were negative, but will still need a few days to rest up. I hope I can get them back soon for their Christmas week events.

This is a busy week and I am just going to do my best to get as many of the things I hoped to accomplish complete prior to the weekend. I have an old friend visiting this weekend and don't want to have too many things on my plate at that time.

Truly, I have so much to say...but really, with all the events of late, feel overwhelmed with the many thoughts and emotions. However, I will say, when people ask where God is during tragedies, or even in cases of sick children, etc...I feel that I see him everywhere. I see him in the people who come to support. I have seen so much love from expected and unlikely places since we found out about hydrops. I see a world currently mourning together and sending so much love to the families in Connecticut. I know we live in a broken world...but God is so many places to be seen...all you have to do is look around and you will see him in the faces of your neighbors, in the faces or your co-workers, patients, friends, children...in acts of charity, in acts of prayer, in acts of mourning...in sweet drawings by children, in music, and in everything beautiful and real in this world.

I truly believe there is much more good in this world than bad. I truly truly believe it and I hope that one day, there will not be trails of separation that keep that love from flowing all the time, and not just as reactions to specific events.

Wednesday, December 12, 2012

Yesterday we hit the 30 week mark...unbeliveable and it feels so good. I went to CHOP in the morning and met with Dr. Johnson. He is a doctor I truly do trust. He looked at Auguste and truly felt he was stable from last week and improving. The conversation was extensive, but he said 3 times during the visit that he did not see anything about Auguste that indicated he would die and I should be confident in being able to bring him home one dayd. He is still concerned about the hydrops and the ultimate cause, and encouraged watchful waiting. He has also encouraged delivery at CHOP where he feels that if the fluid does not resolve in utero or right after birth, that they would be ready to find the answers and help him. We enrolled Auguste in a research study involving an umbrella of children who experiences some sort of pulmonary issue beginning in utero. I am a big believer in research and letting Auguste's trials try to help future babies in his current situation.

I took a tour of the NICU and quite honestly, just for a chance to brag on Greenville Hospital, it was not nearly as beautiful as the NICU in Greenville, but it was still nice and large with private spaces and they have ECMO available. The doctors at this point feel it is unlikely Auguste will need ECMO and even feel that due to his effusions being so mild, he may not even experience respiratory distress, but due to the many unknowns we still face, having everything at our fingertips is still reassurring.

Dr. Johnson's only concern seemed to be the million dollar question, what caused this, will it go away on its own, or what will it take to fix it. However, I will once again say that he seemed quite confident that our baby Auguste was going to be one of the 10% of babies that survive hydrops. He believes Auguste will indeed be our miracle. I have to keep telling myself this over and over, pinching myself to make sure it is real.

I flew home last night and finally returned to work today. It felt good to be back with all of my lovely co-workers and to see my sweet patients, all of whom have been praying for me and Auguste in the midst of their own trials. I am truly blessed.

I had a doctors appointment with my OBGYN this afternoon. I let them know all that was going on. Dr. Twedt has been so confident and encouraging and supportive since the first day of this journey, and I feel blessed to have her on Team Auggie. haha.. The entire office for that matter, the nurses and even front office seem happy to see me continueing to walk in the door week after week, and the nurse told me today she hopes I make sure our story gets told. How sweet is that?!

I did discuss frankly with Dr. Twedt the considerations and pros and cons of delivering in Philadelphia, primarily, that they now believe we should go as long as possible, however, I would still need to relocate to Philly at 36 weeks which would mean being away from my family and work for potentially 4 weeks before Auguste is even born. Dr. Twedt still feels that we have come so far, why risk anything now. She said she felt CHOP was the place to deliver because why risk not having ECMO or any other things we may need now. This recomendation did make me feel more confident in delivering at CHOP despite what may happen in the next 6 weeks, but it is still scary.

I do want Mickey to be at the birth, so it is likely we will still consider a 38 week induction. Since our "induction gone sour" with Eliot, I am usually anti-induction for any and all reasons, but I am strongly consdiering it. Emily was born in a matter of hours and if Mickey is in Greenville, he would need a little more notice. My mother is going to try to come nad be with kids during that time, and obviously, since we have no family in town, she will need some notice as well.

As you can see, lots of logistical things that still need to be worked out.

So.....

for now, watchful waiting, trying not to consume too much of my time with all of the statistics and data and fears, continued confidence that God has this under control, and continued prayer that our needs be fulfilled. He is a God of miracles and we are watching those miracles come to fruition.

Christmas is around the corner...the tree is up and stockings are hung and I truly have never felt as blessed as I feel this season.

I want to continue to thank Beth and Stefen and Nico DeWet for continuing to be such wonderful and gracious hosts to me while in Philadelphia. I want to thank all of the people at the Cancer Centers for their support during this. I want to thank my family and of course, all of my friends. The letters and calls and prayers I have continued to receive mean so very much to me. I am truly without words. The kindness we have received has been a miracle in and of itself, and has blessed us so much. Thank you.

Coming home last night to delightful squeals from my kids, and their continued prayers for baby Auggie every night, so innocent, so faithful, and so sincere....my cup runneth over.

Sunday, December 9, 2012

I read this today and thought it was appropriate for my blog and the way I've been feeling today. I could write a whole blog on this...and thought about it...but it is late and I am tired, so I will just let you read and let it mean what it means to you.

"It doesn't happen all at once," said the Skin Horse. "You become. It takes a long time. That's why it doesn't happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in your joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand."— The Velveteen Rabbit
Love you all, keep praying and keep believing, and be REAL!

Thursday, December 6, 2012

29 weeks and 2 days today. 10 weeks and 2 days have passed since the day they told us Auguste had hydrops fetalis and would likely not survive. The past 10 weeks have been full of ups and downs emotionally, a magnitude of testing and procedures, and multiple doctors visits between 2 offices in Greenville, an office in Charlotte, and the Special Delivery Unit at CHOP. Fortunately, the past few weeks have mostly revealed an active baby with stability, but still very sick and the unknown future possibilities have been endless.

The past few weeks have been highly emotional for me. I see friends from my support groups having babies and the challenges they are facing, and suddenly i felt very alone in this struggle. I realized that I will likely be having this baby in Philadelphia and that if he has an extensive NICU stay, I could be alone for a lot of it. Being alone and facing such challenges and emotional trials would be difficult for me to do alone. I cried myself to sleep several nights in a row worrying about all of the unknowns that awaited us. Hydropic babies sometimes survive, but many die shortly after birth, within days, and some only survive after 3 month stays in the NICU. I have been worried and nervous and scared of what awaited me in the future. Mickey refuses to think about worse cases and has been confident that everything will turn out ok, which I am glad he has felt this way, but the reality of the unknown journey ahead of us has been more difficult for me.

I feel fortunate because I truly do have some of the best friends a girl could ask for. I spoke to my friend Jenny and she was able to identify that despite the bvious, it sounded like I was most concerned about doing any of it alone. She and my other close girlfriends have since told me that they have just been waiting for the point at which they were needed...basically setting a command station, and that they planned to be with me through the completion of this journey. This made me feel sucha peace because I realized that the cold nights in the Philadelphia Ronald McDonald House may be a bit warmer with the oldest friends, who are like sisters to me.

Back to Auguste and less about me:

Last week I mentioned that I felt like his lungs looked improved and that some of his lung tissue expanded all the way to the chest wall...on Tuesday, some both me and the doctor felt they seemed even more improved, and abdomen has been stable, measuring 33 weeks and 4 days, which is actually improved since he grew a week but the ascites did not worsen at all (growing into his abdomen, maybe?). On Tuesday I could tell my docs in Greenville were more optimistic about making it to delivery, and they had lots of questions about what to do at that point, which they wanted the docs at CHOPs opinions on.

Today I went to CHOP. I had a list of questions in hand, from my doctors in Greenville, from Mickey, from me. I was seen my Dr. Moldenhauer and she was shocked at the improvement in his lungs. They even looked better today than Tuesday. I asked how we would know that his lungs were developed enough to sustain life, and she said that was impossible to tell until birth, but that she felt very positive by the look of his lungs that they were developing. She actually called the effusions MINIMAL. His ascites was the same, but she said that it is always the last thing to improve. He has no edema (he has never had scalp edema, but even his chest wall edema has resolved). She was so positive and happy about this. She said that he was still a candidate for shunt until 32 weeks, but that she would be very very surprised if our Auguste ever needed shunts and actually expects to see continued improvement. She said that at this point she would no longer even consider his a "hydropic baby", but rather a "resolving hydrops".

I asked for her honest opinion regarding his survival, and expectations with needs in NICU (with the understanding that a lot of unexpecteds can still occur and that we still do not know the underlying cause of the chylothorax). She said that due to the abdominal ascites, she still felt vaginal delivery was possible, but that would still cause some problems due to infants using their abdomen so much to help them breath, however, she felt that it was unlikely he would require ECMO (though still possible) and that he may not even require chest tubes. She predicted a 2-3 week NICU stay. Do you know what that means? It means she predicted a miracle baby boy who we will be bringing home.

I am without words!!! I believe in miracles and I have been praying for a miracle, but the idea that miracle is within my reach is actually palpable now and I am feeling so incredibly blessed!!!

Thank you so much for all of your continued prayers, they are being answered and we are going to get our miracle.

Please continue to pray because we are not out of the woods yet. I now have to be more concerned about mirror syndrome (presenting with similar symptoms, and can be fatal and the onyl way to save me would be to deliver him)...this is a real possibility and could change everything. We are hoping to get me to 37 weeks (last week of January), and then induce...therefore, we have 8 weeks to get through for the best possible outcomes.

I will be seen Tuesday and will then go home and hopefully try to go back to work for a few weeks (maybe a month even) before most likely returning to Philadelphia at 36 weeks and delivering at 37 weeks. There is a possiblility, even in the event of planned delivery, that we may deliver in Greenville. As he improves, he will require less and less...however, in worse case scenario, or need for ECMO, we would have to be transferred to Charleston or Columbia, and therefore, we will probably decide best peace of mind would be to deliver at CHOP with the people who know us and Auguste intimately. I was given a tour of the special delivery unit today. It is a small unit as only the mothers like me, with sick babies deliver there. Each suite has a window into a "mini NICU suite" where all of the interventions, the neonatologist and his practitioner and nurses are at, and the interventions for baby take place right there and the baby is not just whisked away. I think this is what we will decide, but the idea that we have more options now is relieving.

I am just so very happy and feel so much excitment about truly beginning the planning for my baby, my last baby, my baby boy, Auguste.

On a competely separate note, I need prayer for my peace of mind as I plan for the final days of my sweet dog, Noah, my companion for the past 12 1/2 years. He is worsening and my husband told me I should mke arrangements for when I return home. This is upsetting to me, and not something I wanted to do until summer, and certainly not a stress I wanted to add to the stresses I am already going through, but I know the time has come. Pray for peace in my decisions and peace in my heart as I make them.

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About Me

I am a wife, a mother of four beautiful children, a dog, a cat and a fish, a daughter, a sister, a friend, a follower of Jesus, an oncology nurse practitioner, a homemaker, and so many other things I am or want to be. I spend each day trying to balance the chaos of my life, and make sure that I weigh in heavier in the things that matter most. Life can be complicated and stressful, there is always a pile of clothes somewhere in my home, I haven't done yoga in over a year and I don't think I ever drink enough water...but I love my family with a passion I can't put into words, and somehow, everything always turns out alright.